A third of parents polled said they were not consulted about decisions regarding their child’s medication. Photograph: Joe Raedle/Getty Images

More than half of parents with children in mental health hospitals do not feel their condition has improved as a result of treatment, while nearly a quarter say it has actually deteriorated, according to a survey.

The research was based on responses from 448 parents whose children have been in mental health hospitals in England over the last five years.

The study, carried out by the children’s mental health charity YoungMinds and the National Autistic Society, found that 54% of parents said they had seen no improvement, while 24% said their offspring’s mental health had got worse.

A further 44% revealed they felt unable to challenge decisions about their child’s treatment and a third said they were not consulted about decisions regarding medication.

Sarah Brennan, the chief executive of YoungMinds, said it was deeply alarming that so many parents felt angry and frustrated about their child’s care.

Just more than half of parents surveyed said they lacked confidence their child was receiving the appropriate care and 44% claimed they could not visit their child as often as they would like because of the distance or travel time.

Brennan said: “In the worst cases, young people can be trapped in inappropriate care for years with [their] mental health deteriorating while their parents desperately try to find a way to get them home.”

“That’s why its crucial that young people and their families have clear and enforceable rights that put that young person’s needs at the centre of their care and treatment.”

The two charities have launched a campaign called Always and a petition calling on the government to strengthen and enforce the rights of young people in mental health hospitals.

The campaign is based on the the Always Charter, which sets out 12 rights to which young people in inpatient units and their families are entitled.

These include being fully involved in decisions about the care and treatment they receive, and being treated and supported as close to home as possible.

The charter also states young people should always be “treated with dignity and respect, including avoiding the use of restraint (including chemical restraint), isolation and seclusion wherever possible”.

Mark Lever, chief executive of the National Autistic Society, said families should be fully involved in decisions about the care of their loved ones, adding: “Our joint survey with YoungMinds suggests that many parents of children and young people in mental health inpatient units feel powerless.”

He went on: “This is putting an unfair strain on families who are often already under almost unimaginable pressure. The government must address this unacceptable situation by strengthening the rights and voices of children and their parents.”

He added: “Care and support should always be built around each child, including those on the autism spectrum, and be as close to home as possible.”

All the children of the parents polled for the joint survey have been in Child and Adolescent Mental Health Services (Camhs) tier-4 units.

There are about 1,300 Camhs tier-4 beds in England, which deliver specialist care and treatment to young people with severe or complex mental disorders.

Services are provided for youngsters aged between 13 and 18 with a range of conditions including depression, psychoses, eating disorders and severe anxiety disorder, associated with significant impairment or significant risk to themselves.

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